SMART Moves

A note from TheBody.com: The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

SMART. Sisterhood Mobilized for AIDS/HIV Research and Treatment. A group of HIV-positive women dedicated to providing treatment education and support to women living with the virus.

SMART University. A safe space where women infected and affected by HIV and AIDS can get the information they need in a supportive and inclusive environment.

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In the world of HIV and AIDS, information is key. People living with HIV need information about the virus, about how it works in their bodies, about how to keep themselves healthy. The information needs to be both comprehensive and comprehensible. It must be both available and accessible.

That's a tall order. There's plenty of information out there, and more is being learned about the virus every day. Even trained healthcare professionals working in the field have a hard time keeping up with what they need to know. For everyone else, it can be overwhelming.

That's where SMART University comes in.

SMART Beginnings

Five years ago, SMART University's Founder and President Susan Rodriguez was part of the Women's Treatment Project at the Women's Health Group. "I saw the need to provide treatment education classes to women living with HIV and AIDS," she says, "and also the women who were impacted, who had a loved one with the virus. They needed to get the information in a way that was accessible and understandable, in a supportive environment."

Rodriguez heard from the coordinator of the Women's Treatment Project, Lorna Gottesman, about a training that was being given in California on how to establish and operate an HIV university. The two women applied and were one of the first teams chosen to receive the training.

When they returned, Rodriguez and Gottesman obtained seed money from the pharmaceutical company Glaxo Wellcome to conduct two "sessions" -- a session is a series of classes on a variety of relevant subjects -- and SMART University was born.

Rodriguez knew from experience some of the obstacles they would face. She'd been to conferences where specialists lectured to perhaps 200 people, and the information simply went over everyone's heads.

"I knew my community needed the information and needed to have it accessible," she says. "We chose presenters who could break down the information."

Classes began in early 1998 in space provided by Metropolitan Hospital at its Draper Hall Residence. The first session of SMART University offered two classes a day, one in the morning and one in the afternoon, and offered lunch to the participants. Although the fledgling program had received much-needed support from healthcare providers and the East Harlem community, Rodriguez and Gottesman did not know how to get food donated. Solution to the problem? Rodriguez provided the food herself.

In June 1998, ten women formed the first graduating class of SMART University.

SMART Development

Now in its eighth session, SMART U. has seen a lot of changes, both in the epidemic and in its own operations, and it has experienced its share of ups and downs. When it had to leave its first home at Metropolitan Hospital, the university took up temporary residence in Susan Rodriguez's living room. The school has occupied a variety of temporary spaces since then, and today classes meet in a comfortable room at the midtown offices of technical assistance provider Cicatelli Associates.

Gottesman left SMART U. in 1998, but the void was soon filled. Petra Berrios, a member of the first graduating class, is now SMART U.'s Project Director and Executive Vice President of its Board of Directors. Rodriguez was delighted with her new colleague. "Where I was weaker," she says, "she complimented me. It was a symbiotic relationship, and we've been together ever since." Berrios has also taken intensive training in advocacy with the Leadership Training Institute and is today also on the staff of Cicatelli.

The curriculum has changed, too. "It is a different time," says Rodriguez. "When we started, it was just when meds were showing an improvement. A lot of women were scared at that time, and they wanted to get as much information as possible. Women were eager for the information at that time. There was no one else doing it. there are other places that do it now, but not like we do it."

The focus of the curriculum remains on treatment education, but it has broadened. "With HIV and AIDS," explains Berrios, "the need is constantly changing. As women living with HIV and AIDS, we're very aware that change needs to happen at some point. We try to deal with women as a whole. We deal with breast cancer. It's not just HIV. We look at women as a whole -- aging, diabetes, domestic violence, dealing with your children."

A look at the list of topics that have been covered in recent classes shows the evolution of SMART U. Besides The Immune System, Understanding Lab Reports, Complementary Therapies, and Managing Drug Side Effects, there are classes on such topics as Domestic Violence, Breast Health, and Spirituality.

The curriculum also includes classes on How to Become Your Own Healthcare Advocate and Community Organizing and Advocacy. This is consistent with the philosophy of empowerment that has been the underpinning of SMART U. since its earliest days. The SMART women were among the first grassroots organizations voicing concern about the need for treatment and prevention in sub-Saharan Africa. "We were doing a lot of community organizing, demonstrations, rallies in Washington, Philly, New York," says Rodriguez.

SMART U. has also been involved in the push for the development of microbicides, and have several times offered classes taught by Anna Forbes, one of the country's foremost experts and advocates for microbicide research (see "Beyond Latex" in the March 2000 issue of Body Positive). "We were about making microbicides a household word," according to Rodriguez. "Women cannot always negotiate a condom with their partners. It would be low-cost, especially in developing countries. Not to take the place of condoms. It would be great if the partners would use them. This is a women's issue. If men are not going to be behind us, we need to make our voices heard."

SMART Working

Berrios talks about today's SMART University: "Now we're a little more structured," she says. "We have applications, and we have evaluations. We get critical information from the application process and the evaluation process so that we can tailor what we offer to the needs of the community of women."

There's a Board of Directors, composed of graduates and other women who have been involved with SMART U. in one way or another. There is an Advisory Board of healthcare providers and other professionals working in the field of HIV and AIDS. About a year ago, Berrios and Rodriguez were joined by a third woman who became a crucial part of SMART University. She is Yolanda Diaz, the university's Outreach Coordinator, whom the other women call the "SMART Ambassador."

"I became involved last winter," says Diaz, who was until recently also a Peer Educator at Body Positive. "I met Petra at a Leadership Training Institute training at Cicatelli, and she was always talking about SMART. I asked her what it was about, and she said a group of women getting information. I said I wanted to go there, to give me the address.

"I went through the whole session. I graduated. My second session, I was asked to become Dean of Students. I call the ladies on the phone and ask them if they're coming."

Diaz has been a part of New York's HIV community for a long time, and her many contacts at AIDS service organizations help her in her outreach activities. She goes to conferences, such as this year's United States Conference on AIDS in Anaheim, California. She goes to health fairs. "I take lists," she says. "I give out flyers. I'll leave them at Legal Aid, and I'll leave it at Settlement House and Body Positive and the HIV Law Project."

According to Berries, "Yolanda has interaction when she does the outreach." In October, Diaz received the HIV Law project's Katrina Haslip Award in recognition of her community outreach efforts.

Diaz's job is a combination of reminder and outreach. "I am the lady on the phone asking, How was your week? How was your day? Did you have a rough day, a rough week? We missed you last week at class. We're still here. You can come."

"She understands that as she's making calls it's a way of still doing outreach and finding out if there's a problem," says Rodriguez. "We've found out that there've been people in the hospital this way, and then we can track them. We make hospital visits, bring them flowers, bring them a card, contact their partners, and see if there is anything they would like us to do."

Sometimes the problems are things that need more than flowers or a card. SMART U. has helped students with legal problems, such as landlord-tenant disputes that could lead to eviction, and have referred women for crisis intervention services. "The board of directors is pretty well connected," says Berrios. "they have their resources. They have people they can call in a crisis." According to Rodriguez, the trio make a pretty good team. "We work like clockwork. If one can't do something, the others pick it up."

The efforts of the three women have begun to attract attention. SMART University received one of the 2000-2001 Union Square Awards for Grassroots Activists.

SMART Voices

Apparently, though, SMART U. hasn't been keeping Rodriguez, Berrios, and Diaz busy enough. They've decided to take on another project.

SMART Voices is a literacy project launched this fall in collaboration with Voices Unbroken and the Exodus Transitional Community, two other Union Square Award recipients. Voices Unbroken works with young people and adults in transitional facilities such as group homes and halfway houses, teaching creative writing and poetry. Exodus is an organization in East Harlem that provides services to people coming out of prison and ex-offenders.

While SMART Voices is planned as a literacy/GED program, "We call it a book club," says Rodriguez. "We do journal writing, whatever level you're at. You could be illiterate. You could be wanting to take a GED. You could want to be going on to college. Or you could just want to start writing again."

"And we want a community of women," adds Berrios. "We want a book club. We want to be together."

Among the projects SMART Voices will undertake is writing book reviews for SMART's newsletter, Juice. A longer-term goal is to produce a Spanish-language version of the newsletter.

The New York Public Library is working with SMART and will provide space for the new book club to meet. Diaz explains the advantages: "They have books that you can listen to for those people who just don't know how to read. They have big books. They have computer classes, adult computer classes, and computers for children. And they have computer training."

Searching for a Home

So the women of SMART are moving forward, even as they look for ways to maintain what they are doing now. After four and a half years as what Berrios calls "gypsies," and although they have the use of good space at Cicatelli for now, they would love to have a permanent home. They want to be stable financially, but they stress that the more important thing is to keep the grassroots feeling that they have come by naturally.

A visit to a recent class at SMART University illustrates what the school is all about.

The room in Cicatelli's midtown office is large and comfortable, furnished with rows of tables and chairs. A list of "norms" is posted on the wall -- reminders about confidentiality and showing respect to classmates. The atmosphere is welcoming, with a table of coffee, juice, and snacks.

The students are representative of the SMART student body throughout the program's life. SMART University is open to women infected and affected by HIV; there are no other requirements. (In fact, men have from time to time attended SMART classes ... with the permission of the women participants. Of the roughly 150 women who have participated since SMART University was formed, almost all have been Latina and African-American. While white women are not excluded, the program is targeted to women of color. SMART has served women as young as 18 and women over 70.

Today's class is on Families in Transition. A few years ago, the emphasis was on permanency planning, that is, making arrangements for the care of children whose custodial parents, usually mothers, were expected to die. As people with AIDS began living longer and healthier lives, the focus has shifted to "transition" -- touching the legal bases to ensure that dependent children are cared for during intermittent periods of illness as well as making long-term plans.

The instructor is Millie Pinott, a lawyer with the legal AIDS Society's Community Law Offices. Her lesson is complex, dealing with a myriad of issues around child custody, guardianship, and temporary guardianship. It's the kind of subject that can be difficult to explain and difficult to comprehend by any but trained experts.

Pinott, however, does not speak over the students' heads, nor does she talk down to them. Her style is interactive, not professorial. This is an information exchange, more than a traditional class, and the students are encouraged to interrupt Pinott's presentation with their questions.

They don't need much encouragement, and the discussion is lively. Sometimes it strays from the narrow topic of families in transition, and that's okay. When some of the women bring up problems they have had with the Administration for Children's Services, Pinott explains the law, the realities, and the mothers' rights.

According to Rodriguez, this is typical of a SMART University class. "one of the things we look for in instructors is people like Millie," she says, "that come into the class to do these informational workshops for the ladies. They have that intimate, personal interaction with the ladies, whether it's a female presenter or a male presenter. We pretty much have to know them on a personal level, or someone in the group knows them and recommended them to us. We won't just ask anyone just because they have certain initials behind their name, or certain titles. If we feel they won't be interactive with the ladies on a level that's going to be understandable, giving information the women are going to absorb and be able to understand, then we won't have them."

Laura Engle is a freelance writer with a special interest in HIV/AIDS and a former editor of Body Positive.

A note from TheBody.com: The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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